Janice Foster: Story Shared 2013Age: 38 Sick for: 11 Years Borrelia (Lyme) Infection Acquired:New South Wales Co-infections: BartonellaInternational Travel History: Left Australia for the first time Late 2002 (Approx 6months after becoming ill) Destination: New Zealand. Travelled overseas again in 2011

"It is no exaggeration to say that Lyme Disease has changed my life dramatically in every way possible way, not only physically, emotionally and socially, but also financially (I estimate I’m up to about $100 000 in costs over the last decade), geographically (I can’t afford to live in Sydney near my elderly parents, and the support of family and friends), intellectually (career development has obviously been on the backburner!), recreationally (Ryan and I love 4WDing, but the risk of a vector bite discourages me) and spiritually (I’ve spent so much time under a black cloud, and unable to contribute to the community)."

"The loss of myself was very difficult – probably the hardest thing I’ve ever gone through".

Janice Foster: My Journey

I first became sick in early 2002, in what had been the best time of my life. At age 27, I was enjoying an active social life after a difficult 4 year relationship, had a fulfilling job, and had recently started seeing Ryan, the man who would eventually become my husband.

I can’t pinpoint exactly when my symptoms started; sometimes I think there was a gradual onset, but I also remember that some symptoms seemed to be flicked on like a light switch. I don’t remember any specific incident, like a bite, that set me off, though.

I had brain fog (inability to concentrate, difficulty in making decisions, memory loss, problems reading social situations), and was permanently exhausted, even after up to 18 hours sleep per day.

I started experiencing permanent abdominal pain, although mercifully the severity varied. My gut became distended as though I was suffering malnutrition, I had cramping so strong sweat would run down my face from the agony of it, and my abdominal area was so sensitive that if my hand touched it in my sleep, I would wake up from the discomfort. I took to padding my stomach with jumpers or pillows before carefully putting my seat belt on in the car.

I vomited at least once a daily – sometimes projectile vomit. I’ve always been susceptible to motion sickness, but this became worse; I often vomited when I was the driver! I also battled through alternating diarrhoea and constipation. I had no control over these (or indeed any) symptoms, so sometimes they occurred in public. I took to carrying around plastic bags in my handbag and car – ‘just in case’, and had to use them frequently.

The loss of dignity and – to an extent – independence was very distressing, but what was even worse was the fact that I couldn’t seem to ‘access’ my personality. I didn’t feel like my personality had changed, just that it had been overridden by some kind of symptoms that caused me to be irritable, short tempered, less sensitive and less socially aware.

This felt very different from a depression I had experienced in the past; I pictured inflamed nerves in my brain as the cause. The loss of myself was very difficult – probably the hardest thing I’ve ever gone through.

I had experienced quite a few traumatic events by the time I had fallen sick, but was proud of my ability to get through them; I knew myself well, and I knew what worked well for me in terms of coping. I used to refer to it as ‘having the map’ to get through tough experiences without getting ‘lost’. At this time, when I needed the map more than ever before, it was gone.

Each day I dealt with these symptoms, in addition to the new symptoms that occasionally appeared, such as a continual runny nose and phlegmy throat, hot flushes, thrush, a sensation as though battery acid was running through my veins, my stomach ‘growling’ so loudly at night it would wake me up, and a weird, almost electric ‘uneasy/impending doom’ energy that was physical, emotional and mental.

I also had large black circles under my eyes – I think I physically aged about 5 years within a month.

After a few weeks of sick leave, I realised that I had to return to work – rest didn’t seem to be helping, my GP didn’t have any answers for me, and I had bills to pay.

I tried to exercise, in the hope that this would boost my immune system, but, strangely, this exacerbated my symptoms.

The next 18 months passed in a haze of pain, humiliation and distress.

I had previously been well-liked at work, and had won numerous awards for my leadership and ability to solve customer issues – now, I heard staff bitching about my mood swings and I knew myself that I wasn’t making the best judgement calls at times.

I was also perceived as being ‘too intense’ – and I was! But I had to maintain that level of intensity to form any degree of concentration.

Everything I did took a huge amount of effort – simply walking around, I felt like there was some kind of resistance, like I was walking through water. At my sickest, I used to think that grocery shopping took a couple of hours; surely it had to, based on how exhausted I felt afterwards! To this day, I think of that feeling every time I do my go to a supermarket, although I now realise my shopping takes just 45 minutes.

The smallest things seemed like huge challenges – I remember bawling my eyes out whilst trying to scrub some dried vegetable off a colander, due to the physical effort involved.

Some of my friends started dropping out of my life, and I encouraged others to do the same. I didn’t see any point in explaining to them how I felt; even to my own ears, it sounded dodgy, like I was blowing things out of proportion.

I suggested to Ryan that we should break up. He is 6 years younger than me, and the pressure (applied by me, not Ryan) to be a worthwhile companion to a guy in his early 20s, when I felt about 100 years old myself, was hard to live with, day-to-day. I knew that if I could ‘leave’ myself I would, so it was only fair that he should be given the option to leave me, without feeling guilty. I encouraged him to go and find a girlfriend who didn’t spend most of her weekends sleeping, and the rest either in the toilet or sitting around with an angry black cloud over her head. He refused – I was both relieved and disappointed.

During this time, of course, I did everything I could think of to find answers when I had the energy – I saw GPs, gastroenterologists, naturopaths, a Chinese medicine practitioner and an iridologist. I had comprehensive blood tests, stool tests, colonoscopies, an endoscopy, a helicobacter breath test, colonic irrigation, and something called ‘natural energy therapy’. I drank potions, mixed powders, swallowed anti-nausea medication, inhaled essential oil-laden air and had a weird zapper contraption applied to my spine.

Nothing helped, and the only result that indicated anything might be wrong was a minor elevation in my white cell count, indicating an infection was present somewhere.

Some doctors were honest and supportive (“I really don’t know what’s causing the problem, or who can help, but if you come up with any ideas, please let me know and I’ll do my best to support you”) and others were downright ignorant, disrespectful and rude (“It’s just Irritable Bowel Syndrome – deal with it, some people have cancer”, “It’s all in your head – yes, I can see you are very bloated, but all women have fat days!”)

Ryan and I continued on living life the best we could. Facing indefinite illness, I started worrying about my financial future; particularly my ability to pay medical bills as I continued the search for a cure. As the housing market was booming, we made the decision to spend my life savings on a deposit for a house in a low income area on the Central Coast. It was 2 hours away from family, friends and our workplace, but I felt relatively comfortable that if I had to stop working fulltime, we’d still be able to afford it, unlike rent in Sydney.

Help eventually came from a most unlikely source. In October 2003, I was seriously assaulted on my way home from work in what police believe was a “bag snatch gone wrong”.

I spent about a week in hospital on a drip, and somewhere in my even-foggier-than-usual-brain (I had a head injury), I realised that my gastro-intestinal symptoms were easing for the first time.

Due to the severity of my head injury, it wasn’t until early 2005 that I fully realised the implications of this – maybe food was playing a factor in my illness?

After a few false starts with dieticians, I found my way to the Royal Prince Alfred Hospital Allergy Clinic, where it was confirmed that I had severe food intolerances.

I began following their Elimination Diet, which consisted of foods with low salicylates, amines and glutamates. In a matter of months, my symptom severity reduced by about 75%.

Life was now more manageable, and to my relief, my personality started to come back, completely unscathed! (I had been worried that it would be a bit more jaded and cynical after all I’d been through, but it was exactly the same)

Part of me often listened with amazement as I found myself confidently chatting away with complete strangers without a care in the world.

Whilst it wouldn’t be too much of an exaggeration to call the diet a life saver, I was still worried about the remaining symptoms and also the gaps in my nutrition –I wasn’t able to tolerate any dairy or fruit, and vomited up any vitamin and mineral supplements.

So the search continued for answers. On a friend’s recommendation, I sought help from the Centre for Digestive Diseases (CDD). Here, a more thorough colonoscopy was performed with a high powered microscope, which identified small red dots identified throughout. I was diagnosed with an infection – the causal bacteria was unknown.

Whilst I had some promising improvements with the resulting antibiotics, they couldn’t be retained long term. As a result, I was offered the ‘last ditch’ treatment of Faecal Microbiota Transplantation (FMT), which basically means I had donor poo inserted into my colon. Yep, I was THAT desperate!

The theory is that although science has not yet identified the bacteria causing the problem, preventing effective antibiotic treatment, a good mix of bacteria from a healthy body may be able to eradicate the ‘bad’ bacteria.

Again, I had some improvements in the short term, but couldn’t maintain them long term.

That said, FMT was the only medical procedure to make any difference, so I continued to undergo a week of treatment every 6 months in 2010 and 2011.

By this stage, after almost decade of illness, I estimated I’d spent about $80 000 on the search for a cure.

Ryan and I watched our siblings and friends start families of their own, but we were reluctant to do so ourselves – I was worried that my dietary limitations would mean I was unable to provide enough sustenance for the foetus, and that I’d pass on my illness to the baby. The ‘unease/impending doom’ feeling also reinforced my belief that this world wasn’t the kind of place I’d like to bring a child into.

Ryan was also worried about the impact the demands of a baby (healthy or not!) would have on my energy levels.

In November 2011, I had to fly to Fiji to be bridesmaid at my sister-in-law’s wedding. I was a bit worried about my ability to stick to my diet overseas, and the possibility of picking up more bad bacteria, and, on my return to Australia, it seemed these fears were justified.

My level of brain fog, fatigue and nausea increased, and I experienced new symptoms: deterioration of my eye sight, dizziness, an insatiable appetite (I’d eat a 300gm steak and 1.5 kg of roast potatoes for dinner, only to wake up in the middle of the night hungry!), my heart racing, my periods lasting for 2 weeks, and occasionally, the inability to swallow.

About 2 years into my illness, my weight had stabilised at 45kg, and although I hadn’t lose any further weight since, there was suddenly something about my body that made me look far more gaunt.

By December, my GP was becoming alarmed. He started ordering more tests, and I was diagnosed with a thyroid condition called multi-nodular goitre, and also osteopenia (the pre-cursor to osteoporosis), which was a result of my dietary limitations.

My GP suspected there was a central cause for all my symptoms, and was reluctant to treat the newly diagnosed conditions without being sure he wasn’t exacerbating things in any way.

He tested me for some auto-immune conditions, and despite his alarm, couldn’t understand why I sobbed my heart out when they all came back negative – I just wanted answers.

In early 2012, I floated between my GP and the CDD – this time, a FMT session resulted in no improvement at all.

I knew that this was it; after pushing myself to the absolute limit for over a decade, my body couldn’t cope anymore. I started looking into reducing my working hours with a heavy heart, as I knew whatever illness I had, it was likely to be expensive to treat – assuming, of course, that it was ever diagnosed!

It was around this time that my sister told me that her step-daughter had similar gastro-intestinal issues, and had recently been diagnosed with Lyme Disease.

When she suggested I get tested, I felt a bit sceptical – I’d watched media reports on Lyme sufferers with much empathy, but I couldn’t relate to their seizures, which seemed to be the defining symptom of Lyme.

I was even more sceptical when I discovered the initial appointment with a ‘Lyme literate’ doctor would cost around $2000, and involve a 6 hour round car trip.

However, Ryan pushed me to leave no stone unturned (God love him!), and so the appointment was made.

We soon discovered the reason for the doctor’s fee – he spent 90 minutes educating us on Lyme Disease, and walking us through a list of approximately 50 symptoms, of which I have about 60%. He also explained that despite the media’s portrayal of Lyme, not all patients have seizures; Lyme is a systemic disease and impacts different bodies in different ways, with varying levels of severity – hence the complexity!

The doctor explained that the Australian government don’t believe Lyme can be acquired here; as a result, medical staff do not receive training in the disease, and when tests are conducted, they are not of a world-class standard.

The doctor, who works in an area with a high tick population, therefore had to go overseas to undergo his training via the International Lyme and Associated Diseases Society, and would be sending my blood samples to specialist laboratory Igenex in America for analysis.

Suddenly all the pieces were falling into place – the doctor confirmed that many sufferers have severe food intolerances, and that Vancomycin, one of the antibiotics supplied to me by the CDD, was quite effective against one form of the Lyme bacteria; hence my short term improvement whilst under CDD’s treatment.

He explained that the Lyme bacteria don’t survive in oxygenated environments but thrive when oxygen is low – this is probably the reason why my condition deteriorated after my Fiji trip; I would have spent a total of 10 hours in a plane.

This also explains why I felt worse after exercising, as exercise increases oxygen flow into the blood, causing the Lyme bacteria to die, releasing toxins as it does so (known as a Herxheimer reaction).

The doctor confirmed that Lyme Disease can indeed cause mental illness due to inflammation/irritation in the brain. It can also be a ‘side effect’ of Lyme, in that sufferers may become depressed due to the limitations on their normal lives, and the lack of awareness/support in the general community.

The doctor told me that based on our discussion, he was “almost certain” I had Lyme Disease, and that it was “highly likely” I had the co-infection Bartonella. He also told me about the natural killer cell CD57, which is sometimes used as an indicator of the severity of illness. People with Lyme tend to have a CD57 count of below 60, he thought I’d be “lower than 60, but higher than 20.”

I desperately hoped that I’d finally found a diagnosis, but after years of empty promises from medical practitioners, I still had my doubts.

But when the test results arrived, it was clear that the doctor was correct on all counts. I received a ‘positive’ result for Lyme and Bartonella, and my CD57 count was just 30. Based on clinical presentation, I may also have the co-infection Babesia; this is still being investigated. I’m keeping my fingers crossed, as the most effective antibiotic for Babesia costs around $300 a week, which is not subsidised by the government.

I would like to stress that at the time I became ill, I had never left Australia. There is some evidence out there that Lyme Disease can be sexually transmitted, so I can’t say for sure that I was bitten by an Australian vector, but I think the possibility of sexual transmission makes it all the more important for the Australian government to invest significant time and resources into research, rather than leave it to the Karl McManus Foundation (KMF), who are currently funding research at Sydney University.

It should be noted that much of the KMF’s funding comes from the donations of Lyme sufferers, who are already under huge financial pressure due to the prohibitive cost of antibiotics, and, in many cases, their inability to sustain employment.

Due to the risk of sexual transmission, Ryan also underwent testing, and returned a ‘positive’result for Lyme Disease. He doesn’t have any symptoms at this stage, but is undergoing a herbal medicine regime in the hope of strengthening his immune system for it’s ongoing battle.

On the basis of our mutual infection, my age (38) and the likely length of my treatment (1-2 years), Ryan and I have come to the realisation that having children is just not going to be possible for us. Lyme is very difficult to deal with as an adult; I can imagine it would be absolutely overwhelming for any child we passed it on to.

This sentiment seems to be a common one in the Australian Lyme community. It blows my mind that the Australian government is showing so little regard for a disease that is capable not only of ending lives, but also of preventing them from even beginning. So much of this is preventable!

So anyway, I am currently undergoing an aggressive treatment regime including multiple antibiotics, herbal supplements and a detoxification protocol. I am in the care of a naturopathic doctor in America who specialises in Lyme, an integrative GP in Sydney who works closely with the naturopathic doctor, a GP here on the Central Coast who addresses any immediate concerns, a remedial massage therapist, a physiotherapist/pilates instructor, an ophthalmologist, a dentist who specialises in environmental medicine and another integrative GP who specialises in metal toxicity.

There is no way I could maintain any kind of work during this time, and fortunately my employer has very kindly agreed to give me unpaid leave. I am looking into submitting an Income Protection Insurance claim to my superannuation provider, but I’m fairly pessimistic, based on the experiences of fellow ‘Lymies’, who have been told by their insurers that Lyme doesn’t exist in Australia, and even if it did, it could be cured after a month of antibiotics.

It is no exaggeration to say that Lyme Disease has changed my life dramatically in every way possible way, not only physically, emotionally and socially, but also financially (I estimate I’m up to about $100 000 in costs over the last decade), geographically (I can’t afford to live in Sydney near my elderly parents, and the support of family and friends), intellectually (career development has obviously been on the backburner!), recreationally (Ryan and I love 4WDing, but the risk of a vector bite discourages me) and spiritually (I’ve spent so much time under a black cloud, and unable to contribute to the community).

That said, I’m well aware that I’m one of the lucky ‘Lymies’ – there are sufferers who can only dream of functioning at the level I do; some classify a ‘good day’ by the ability to stand up for more than 30 seconds!

Due to the lack of research internationally, it’s not known how long my treatment will take, and how much I am likely to improve, but I am doing everything I can to better the odds, and am looking forward to a day when I have the energy to be more active in calling for recognition and appropriate treatment of Lyme Disease.

Thank you for taking the time to read my story – being ‘heard’ is an important part of the ‘Lymie’ battle.

"Our lives begin to end the day we become silent about things that matter" Martin Luther King Jr.